Wednesday, January 26, 2005

We had a memorial service for Will tonight, and were overwhelmed by the friends and family who attended. We were particularly moved by seeing so many of the people who cared for Will, who came to feel like members of our extended family during our three-month stay at the NICU.

Mary and I each read something during the service that expressed what Will meant to us:

I can't remember a time in my life when I didn't know that I wanted to be a mother. I watched my mom seamlessly manage the lives and needs of her children and knew I could do it too if I just followed her example. I had only an inkling of awareness of the depth of love I would feel for a child of my own, but even that small amount was enough to make me feel I would burst with happiness the day I learned that John and I would become parents.

As with most things in my life, I made meticulous plans about how we would prepare for his arrival and what we'd do once he was here. I signed up for childbirth, parenting, and breastfeeding classes. I read all I could about cribs, car seats, and strollers. I planted tulips and daffodils that would come up just as we were ready to venture out after spending a few weeks inside getting used to each other.

Will's early arrival turned all my plans on end and forced me to focus on each single day. No planning. No long views. Just each day, each hour, sometimes each minute. I never had any idea what was coming next and had to brace myself for each new emotion as it washed over me. Joy. Pain. Fear. Anxiety. Impatience. Confusion. Triumph. Defeat. Love. Love. Love. Will gave me the gift of time. The only thing that mattered during those 12 weeks and four days was how many hours I could spend at his bedside before collapsing into sleep in my own bed back home.

Will taught me to be a mother in ways I never imagined. Instead of a diaper genie, we had a diaper scale to keep careful track of every cc. Instead of him falling asleep in my arms, I passed out at his bedside the first night I was allowed to see him. Instead of listening for his cry, I had to watch closely. There was no sound, but I soon learned how to tell when he needed me and when he needed someone more expert. I knew to draw his flailing arms close to his body, bringing his hands to his face. I knew not to touch his sore little feet, but to place a finger close and let him push if he wanted that contact. I knew how comfortable he was on his tummy with his little knees tucked up under him and one hand on his cheek.

And I knew in the end that he just didn't have anything left for the fight. So many times John and I told him that if there was anything we could do to take away his pain we would. We didn't know, or chose not to think about what that promise really meant. I held him as he slipped away, knowing that in place of his pain would be ours forever. And that was the only thing I could do for him as his mother.

I still long to be a mother, but again, I must find my own path as a mother without a baby. I hold the memories of his tiny, perfect hands squeezing my finger; his eyes straining to reopen after being swollen shut for weeks; his chest rising and falling as he learned to breath through the ventilator; his blonde eyebrows, so like John's, barely visible against his forehead; the surprising weight of his tiny body in my arms, once while he lived and once while he died. All those things make me an invisible mother. I haven't spent a lifetime learning how to do this, but now I have the rest of my life to figure it out.

Goodnight sweetie. Mom and Dad love you very much.


One of the first things the staff at the hospital had us do after they admitted Will as a patient was to have us fill out a form that asked many odd questions. Do you have running water in your home? Do you have reliable transportation to and from the hospital? How do you best learn information? We could confidently answer "yes" to those first two, but the third was a puzzler. How do we best learn? It offered suggestions, such as "reading," "hearing something explained" or "doing." Neither of us is overly handy, so we thought at the time that the first two might best apply depending on the situation.

Before Will was born, Mary would dutifully read through the "What to Expect When You're Expecting" books, getting ready to be a mother. For some reason, fatherhood was more abstract for me. I needed the baby in front of me before I could really concentrate on what it would mean to be a Dad. I tried to read the books, but without my baby there to reference, it was hard to grasp. Once Will arrived, however, I had to read everything I could get my hands on. I had to know everything about him, what made him tick, what he needed, and what to expect as he grew. "The average premature infant has little strength for moving arms and legs about," I would read. Ha! I would think. Will's got an iron grip already.

We also spent a lot of time discussing Will's care with his doctors and nurses. It helped to have the blog. We're both writers, and as such we know we grasp something when we can turn and explain it to someone else. In that way, we knew as much about Will's care and condition as anyone, and that deep understanding really allowed us to help him in ways that had never crossed our minds when we thought of what being a parent would entail. Never could we have dreamt that it meant telling nurses to put an IV far enough up his wrist so that he could still get a hand up to his face to comfort himself, or to give him a boost of oxygen before an unpleasant task like having a diaper changed, or to make sure they gave him the correct dose of the sedative that helped him through painful times.

At one point during all this, a former co-worker wrote an e-mail to say that she was having a hard time reconciling my warm, almost mushy blog posts with the reserved, cynical person she thought she knew. "Maybe I didn't know you as well as you thought I did," she wrote. "Or maybe," I replied, "I didn't know myself as well as I thought I did."

And I think that is perhaps the ultimate thing I learned from Will. Not only did I want to be a Dad, I wanted to be Will's Dad, and that meant opening myself up to feel things I never thought possible. How did I learn that? The entire time, I thought I was learning by reading as much as possible and discussing things with everyone I could find. What I know now is that I was really learning by doing. I was changing Will's diaper, getting so excited at seeing pee there that it was all I could do to keep from dancing. I was offering him a finger to grab to help him get through some painful procedure. I was doing what it took to be his Dad, and through that I learned the greatest thing of all.


Sunday, January 23, 2005

William Albert "Will" Kenyon, infant son of Mary and John Kenyon of Iowa City, died Saturday, January 22, 2005, at the University of Iowa Hospitals and Clinics from complications of premature birth.

Will was born October 26, 2004 at 24 weeks gestation. He weighed 522 grams at birth, slightly more than one pound. He spent his 12 weeks and four days of life in the Neonatal Intensive Care Unit at the Children's Hospital of Iowa under the expert and loving care of a dedicated team of doctors, nurses, and therapists.

Will was a strong fighter, fending off numerous challenges. He liked to hold his hands next to his face and chin. He was most comfortable lying on his tummy. He had a strong grip when offered a finger to hold. A parental hand cupping the top of his head kept him calm and comfortable. Sometimes he tapped his feet as if hearing music in his head. He was soothed listening to a lullaby CD and hearing his parents read stories, especially Goodnight Moon, Two Little Trains, and Jamberry.

In addition to his parents he is survived by his grandparents, Bill and Holly Kenyon of Des Moines, Iowa, and Martin and Maureen Geraghty of Evanston, Ill; great grandparents Jesse and Margaret Askren of Chariton, Iowa, and Mary Regina Ganey of Chicago, Ill.; and numerous aunts, uncles, and cousins. Will was also loved and cherished by hundreds of friends, family and strangers near and far who followed the story of his life as chronicled lovingly each day by his father at

The family will greet friends from 5:30 to 8 p.m. Wednesday, January 26, at Gay & Ciha Funeral and Cremation Service, 2720 Muscatine Ave. in Iowa City. In lieu of flowers memorial donations may be made in Will's memory to the William A. Kenyon Memorial Fund. The fund will support other babies who face struggles as Will did in his short life.

Will demonstrated each day the value and fragility of life, and we are thankful for every moment we spent with him. Parents hug their children a little harder because of Will. We will hold him in our hearts forever.

Saturday, January 22, 2005

We lost Will tonight. He fought so hard for so long, but in the end there was just too much to fight. We love him so much and are heartbroken. We will miss him.

William Albert Kenyon
Oct. 26, 2004 - Jan. 22, 2005

Friday, January 21, 2005

Will's condition has deteriorated rapidly today. Please pray.
Once again, we're not sure what to make of Will. After doing well enough all night that we did decide to go home and get some sleep -- they were able to turn down the settings on his ventilator and he continued to pee -- he started to deteriorate this morning. First he stopped peeing around dawn as his blood pressures started falling off, then, around noon, he started needing more oxygen and was having trouble with a fluctuating heart rate. They've since gone up on the ventilator a bit again, have increased some of the medicines for his blood pressure that they had weaned, and did a scan of his heart to see if it is beating efficiently. If not, they can change some of the medicines or dosages they're giving him to help with that. So, while we're happy that he seemed to be doing better with breathing, it is distressing that his urine output and blood pressure are off again. It feels much like it did on Wednesday as we waited for his blood pressure to come up and for him to start peeing. They have said that as he fights the infection, dying bacteria will burst and the toxins that are released can cause further problems. So, while he may be getting the upper hand on the infection, it's not going to go quietly. He needs to stay strong through this so he can continue to fight this off until it's finally licked. Each time it feels like he has turned the corner, we find there is another one right after it.

Thursday, January 20, 2005

Just a quick note to say that Will continues to do well this evening. He was doing well enough this afternoon that Mary and I finally went home for a short while to clean up and recharge. When we returned just now, his nurse practically ran up to tell us how well he'd done this afternoon. He continues to pee (she told us that between 4 p.m. and now he had more come out than go in, for example, which is just what he needs), is breathing well on the new ventilator and seems to be more comfortable. They also had ultrasounds taken of his abdomen and head, just to make sure there was nothing causing this downturn beyond the infection. Both scans found nothing wrong. So, he's still very critical, but doing so much better than he was yesterday. It feels like a tremendous weight has been lifted. I don't know if that will allow us to feel good enough that we'll go home to sleep tonight, but it is at least crossing our minds, something that would have seemed unthinkable 24 hours ago. This kid is so strong that I really can't wait to get to know him better. Now I'm more confident that I'm going to get that chance.
Will's doctor just came in this morning to check on him and said that she has taken care of many other babies that probably would have given up when faced with what Will is facing. Not Will. He faced it down, at least for now, and had a good night. He finally started peeing around 11 and hasn't stopped since. They have him down to needing 70 percent oxygen instead of 100 percent. Neither might sound like a big deal, but both are great news. If he keeps peeing, he can get some of this fluid off and get on the mend, and if he continues to tolerate this new ventilator it can keep him in a better place while he fights off this infection.

He's far from being out of the woods, but last night's progress was a huge step in the right direction. Beyond the emotional lift that this gave Mary and me last night, you can tell that the doctors and nurses are a bit more confident today. They know that Will responds. It's all relative, of course. He is probably just as sick as he was Tuesday, which was as sick as he had been until Wednesday, but we're hoping that yesterday was the bottom and that he's fighting his way back to the top. Today will be just as important as last night in that regard. Progress is great, but he must sustain it.

Thanks to everyone for the support. We know it helps. Dr. Colaizy said that Will obviously has deep reserves that are getting him through this. We all know how tough he is, but know too that the army of support behind him is giving him an extra little push. Three of his former attending doctors even pitched in yesterday. It was like a reunion. Dr. Klein talked with us about the new ventilator, Dr. Dagle helped out in numerous ways, and Dr. Segar (who was Will's attending for his first five days) put in the arterial line last night.

"He's going to be an interesting little boy," Dr. Colaizy said. We couldn't agree more, except to say "he is an interesting -- and wonderfully strong -- little boy."

Wednesday, January 19, 2005

I've been thinking all day about how to write this post and haven't really come up with anything, so this is going to be pretty stream-of-consciousness. Will is having what I would guess is his toughest day today, and is headed into what might be his toughest night. There isn't much going right in his world today, and it is taking its toll. They gave us quite a list of problems when the doctors discussed Will's condition with us today: The infection is causing problems in several areas, his kidneys aren't working great, his liver function is worsening and his lungs, as always, are not in good shape. He continues to take on fluid, and the results have left him largely unreconizable. His face is so puffy that he scarcely looks like the Will of just a week ago, let alone a month ago when he was doing OK. It's so hard to see him like this, because he's obviously uncomfortable and in pain, with no sign of it letting up soon.

They continue to change his treatment to address all of these concerns. They put him on a more powerful ventilator today that will do a better job of expanding his lungs in the face of the large amount of fluid pressing down from all sides. They add and increase medicines at a rate that makes it difficult for us to keep up in the hope of helping his lungs, increasing his blood pressure, helping his urine production and reversing some of the liver damage. The ventilator change is the most significant today; it should at least make breathing easier for him as he fights this. Another couple of changes should help him, too. They inserted a catheter into his bladder to get the urine out even when he doesn't feel like peeing. It hasn't gotten much, so for some reason he just isn't making much. He really needs to, because there's no other way for him to get rid of all this fluid. They also put an IV in an artery in his arm so they can draw blood samples from that and also get better blood pressure readings. Both things have been compromised by all of the fluid he is carrying, and now they'll be able to get more accurate readings that will help them to more specifically address his needs.

I have constantly written here about how tough Will is. No one who has stuck by us through this would doubt that for a second. I only hope that he continues to be tough enough to pull through this. Though the doctors say they have other options for helping him, much of this is up to him right now. His systems must respond to the treatments, and he must continue to have the strength to fight off this infection and to stay stable while things improve. That won't be easy. Mary and I will spend our third night in a row here at the hospital, because we just can't bring ourselves to leave his side. Somewhere down in there, I hope he senses that. We're running on fumes ourselves, but need to somehow find a way to continue to be strong, too, for him.

We appreciate how much everyone has been there for us through all of this and how much everyone has done. Tonight, and for these next few days, please do whatever you do to lift someone up and ask for help for them, and do it for Will. Pray, think good thoughts, light a candle... whatever it is will help. The doctors have said that Will has made it over hurdles already that other babies might not have conquered, so we hope that he continues to find that strength and get through this, too.

Tuesday, January 18, 2005

Will's condition is taking its toll on all three of us today. Will is doing better, but has had a rough 36-48 hours thanks to an infection, his edema and the fact that even at his healthiest he has sick, immature lungs. Mary is home with a stomach bug, tired and not feeling well, and I'm in the best shape, simply exhausted having stayed up all night to keep an eye on Will. Mary seems to be feeling better, there's nothing wrong with me a good long nap won't fix and Will is very slowly coming around.

Will's main issues the past couple of days have been a low blood pressure, no peeing and the need for significantly increased ventilator support. All of this can be attributed at least in part to an infection that seems to have settled in as pneumonia. Meanwhile, he continues to take on fluid and hasn't been peeing it off, so he is incredibly puffy and very uncomfortable. Every movement seems to make him miserable, so he is on morphine and a sedative that help to keep him calm. To fight the infection -- there could be more than one, actually -- he is now on six different antibiotics. That way he has pretty serious blanket coverage that should knock out whatever he has. They also have started him again on the dexamethasone, a steroid that in the past has really helped his lungs because it can reduce inflammation and open the airways. He is on two medicines designed to increase his blood pressure, a diuretic and the usual slate of medicines that just help him to get through each day.

Yesterday he was OK, but by evening he was needing a lot of ventilator support and just wasn't doing well. They made some changes that stabilized him, but after a decent night, he had some trouble again around dawn, so they increased his ventilator support again. That seemed to help, and now he is requiring less oxygen than before (though still considerably more than he does when healthier). His blood pressure has improved and that, coupled with the diuretics finally led to some pee. It wasn't much, and it hasn't happened again since that small burst at about 9 this morning, but it was more than he'd had in the previous 24 hours, so it was a good sign. He needs to do that a lot more to get rid of his excess fluid. He's locked into another of those vicious cycles: His lungs aren't filling well because of the fluid, so the blood return to his heart isn't as efficient, so that blood isn't getting to his kidneys, so he isn't peeing, so the fluid doesn't go away, and so on and so forth. If they can get him peeing better, they can break that cycle and put him back on the path to recovery.

There still is good news. The chylothorax output has plateaued, if not decreased, and they continue to wean the octreotide. I'm still skeptical, but he so desperately needs to get hurdles out of the way that I'm willing to suspend disbelief and just hope that they're right. One less thing to deal with.

Monday, January 17, 2005

Will is doing a bit better today; he needs less oxygen than he did last night and his blood pressures have been better. Neither is going to get him a gold star for the day, but progress is nice. The good news, though I'm highly skeptical of it, is that the doctors think his chylothorax has pretty much resolved itself. I find that hard to believe when the output seems to have been increasing, not decreasing, over the past few days, but they're the ones with 14+ years of medical experience as opposed to my 83-day intensive course, so I'll defer to them for now. They're going to wean him off the octreotide in the next 24 hours and then watch to see if the effusion increases. I absolutely want to remain positive about this and I certainly hope they're right, but after watching them restart his hydrocortisone and nitric oxide, and watching them increase his dopamine last night to what it had been on Friday before they weaned it Saturday, I'm going to need to see sustained proof before I'm convinced.

The strangest thing is Will's weight. We were here until 2:30 last night, so we were able to see many of the things that normally transpire while we're home asleep. We've helped to weigh him before, but this was strange. While I lifted him off the bed, his nurse gathered up all of the things attached to him and then zeroed out the bed (they do this, then set him back down so that he's the only new element to be weighed. It's the only way to weigh a kid with medicine pumps, chest tubes, IVs and other things in his bed with him at all times). Each time I would set him down, his weight would register somewhere between 2100 and 2300 grams. That's up from 1871 yesterday. They settled on 2300 some odd grams, which means according to their calculations he put on about 400 grams yesterday. Remember, a pound is 453 grams and he dipped below that in his first week briefly, so you can see it's quite an amazing weight gain. Though he looks miserably puffy (his skin is stretched so tight in places that it is shiny), he doesn't look that puffy. Regardless, he really needs to get that fluid off. It's no wonder he's having trouble getting his lungs to inflate when he has that much fluid around them. So, they're limiting his intake today, continuing to give him diuretics and hoping that he'll start peeing good again.

Sound familiar? Save for the change in his chylothorax, this probably sounds exactly like what I wrote last Monday. I'd check myself, but it's too depressing. We just need to hope that they're right about the chylothorax and that the antibiotics they're giving him will knock out whatever it is now that has him against the ropes. Otherwise, Will's to-do list today is short once again: breathe and pee. The doctors will take care of the rest.

Sunday, January 16, 2005

There is a real sense of deja vu with Will's condition today. Every one of the ways one would use to describe him -- puffy, needing more oxygen, still dealing with the chylothorax, not peeing so great, decent blood pressure, etc. -- has been used several different times over the course of his 82-day stay here to describe previous days. Maybe, though it's such a blur that I'm not sure anymore, they've been used all together to describe a day exactly like this one. He's not doing bad, not doing great, just... doing.

It is frustrating, because each of the few times we've felt like he was making real progress, it has lasted for only a few days before something rose up to drop him back where he had been before the move ahead. This time it seems to have been an infection, and again, we have been here before. So, he is sedated to the point where he hasn't moved since we arrived around 10 a.m., is on higher ventilator support and has a bit more output from his chest tube. He is almost as puffy as he was before losing all that weight last week, and save for the fact that the output from his chylothorax is about a quarter of what it was this time last week despite today's increase, doesn't seem to be doing much better than he was then.

We know this is what we're in for over the next several weeks or more, and most of the time we can deal with that. But seeing yet another good stretch negated just takes so much mental energy that we sometimes find it hard to muster it. Throughout this whole adventure, Mary and I have found that one of us is usually able to deal with things OK on any given day while the other is usually hit pretty hard by it. We've been able to prop each other up thus far, and I cringe to think of what the day will be like when we're both having trouble. If history holds, Will is going to rebound just fine from this infection and get ready for the next hurdle. That small move forward is usually enough to pull us out of the funk that his lack of progress puts us in. As another tough weekend comes to a close, we hope the coming week holds such a recovery. We feel like we need to be strong so that we can support Will, even if we do so sometimes with little more than good thoughts. But sometimes it is Will who, through his strength, helps us, picking up our spirits with the slightest good signs as we prepare for what is yet to come.

Saturday, January 15, 2005

Maybe there is something about the weekend that Will just doesn't like. He can be cruising along and then Friday hits and... trouble. Today we're left waiting to learn the reasons behind this latest downturn. The good news is that his blood pressure is back to normal. They increased his dopamine and restarted hydrocortisone, both of which help with that and seem to have done the trick. They had weaned him from the hydrocortisone last week, but they are finding, as with the nitric oxide which also was restarted this week, that Will sometimes needs to be eased off of things very, very slowly.

Today he was needing more oxygen, which may be a sign that he does indeed have an infection. While they sort that out, he'll continue to go without food again. The fluid around his left lung isn't recollecting in the pleural space, though it is still coming out through the tube. That means it's still leaking, obviously, but that at least it isn't compromising his breathing.

So, while he's not doing great today, he's OK, and was doing better as the day progressed. We've been here before, several times, and need to remind ourselves that it seems like each step forward is followed by a short step back that takes a couple of days to resolve. They say that slow and steady wins the race, and this clearly is a marathon.

Friday, January 14, 2005

So much for stability. Will dealt with blood pressure troubles all day, which meant a day of many different potential fixes. By the time we left tonight, things seemed to be headed in the right direction.

It's no surprise that he'd be dealing with this, as it has happened before when he loses a lot of weight by peeing off excess fluid. That tends to drop his vascular pressures and hence his blood pressure. To be safe, they started him on antibiotics and took blood and urine cultures because an infection could also be the culprit. Then again, increasing his dopamine and giving him some IV fluids, which they did, can also get him back on track. They stopped his feeds again because they don't want to introduce anything new for him to work on if he does have an infection. If initial tests don't point to an infection, they could restart the feeds as soon as Saturday morning. We'll see. He was still tolerating them well, which is a good sign.

Add to all that the fact that he had another eye exam today, and it was a bit of a rough one for Will all told. None of the babies like that exam, from what we're told, and I can't say I blame them. The ophthalmologist pries open his eyes after the nurses already have done so to put in dilating drops, and takes a look to see if he can detect any problems. So far, Will's eyes have been OK, but really too immature to see much of anything anyway. They're going to start doing the exams weekly rather than every other week, so that must mean they're getting to the point where they think they can see more.

Even though he had some setbacks, they seemed minor overall. His chylothorax continues to be a trickle, and his x-rays have been good. They've gone down on his ventilator pressures again, and he seems to be breathing pretty well. He won't lose any weight today because his output has slowed quite a bit and they gave him fluid for his blood pressure, but he shouldn't be up much either. We hope this is just a plateau as they catch up with the significant changes he has undergone this week, and that he can start making progress again soon.
A welcome to those checking out Will's blog thanks to a link put up today by Chicago Tribune columnist Eric Zorn on his blog at the Tribune site. You've discovered us at a pretty stable time for Will, and I won't apologize for the lack of drama in recent posts. Will has seen enough of that already, and he's only 11 weeks into his life and still more than four weeks away from his original due date. What you'll find here is a chronicle of the ups and downs of one premature baby getting some of the best care available as he deals with more than his fair share of troubles. You'll learn more than you ever wanted to know about chylothorax, patent ductus arteriosis, brochopulmonary displaysia, ventricular septal defects and the other hurdles placed before our son. The best place to start, if you're interested, is at the beginning, which seems like a lifetime ago. Come to think of it, for Will, that's exactly what it is.
Another fairly boring post, which is just the way we like it -- rather that than to be remarkable in "let's add this to our textbooks" sort of ways. Will seems to be tolerating the breastmilk OK; three feeds (with another coming at noon) with no sign that he isn't liking it. The chylothorax continues at its slowed pace, and his doctor said that if it continues at such a slow rate and he does OK with his feeds, they'll increase the amount of milk he gets a bit over the next few days. He has slowed down in the diaper-filling department, so they're going to restart the diuretic. As a result of that slow-down, he gained weight again today, but only a few grams. So, a few small changes in an otherwise good, stable day. We'll take many more of those, please.

Thursday, January 13, 2005

So far, so good. They checked Will's stomach at 8 p.m. and it seems he already has digested what they gave him at 6 p.m. As long as it doesn't show up in the chylothorax, he's in good shape. Otherwise, things are pretty much status quo. He's breathing well, seems pretty comfortable and is doing good. His blood pressures were a bit low tonight, but that might be because he's lost so much fluid over the past 48 hours that he's getting a bit dehydrated vascularly. Not a surprise, and something they can counteract fairly easily.

I don't have much more to add about restarting his feed, actually. They'll just keep a real close eye on what comes out through the chest tube, and if it looks like anything from the breastmilk is making its way there, they'll stop the feeds again. It's good to see that after more than a month of not getting anything, however, that his digestive system seems to have picked up where it left off.

OK, I know this runs counter to everything I've written here the past few weeks, but Mary just called with big news in Will's world: He's going to eat again. Today. Breastmilk.

With the effusion pretty much dried up around his lung, they think it's OK to start feeding him a little bit. Not only that, but they're going to start with breastmilk rather than Portagen, as previously thought. The main reason for starting the feeds is because his liver isn't functioning the way they would like. That's a not-unexpected side effect of not having eaten for the past month. They can give him medicine to kickstart those functions, but the one they really want to give him can't be given unless he has something in his stomach. So, it sounds like they'll start him out on 2cc of breastmilk every six hours, and will see how he deals with it. If he's OK with that (meaning both that his digestive system kicks into gear after being on hold for a month and that the milk doesn't cause his pleural effusion to restart), then they'll perhaps progress a bit in the quantity and frequency of his feeds and start some of the medicine that will help get his liver function back on track. They think breastmilk will be OK because it doesn't have many more of the long-chain fats than the Portagen, and with the chest tube in they will be able to tell immediately if it is causing a problem. I apologize if this sounds a bit vague, but I'll be able to flesh this out a bit once we get a chance to talk more with the doctors.

And to think I had been remiss in posting today because I was sure people would tire of the ceaseless fawning over my incredibly shrinking son! On that note, he lost another 35 grams today, with not-so-dramatic results in terms of his appearance. He continues to be stable in terms of his breathing and everything else, which puts him on the way toward having one of his longer good stretches to date.

Wednesday, January 12, 2005

Will continues to do really well tonight. He had a record-setting 52cc diaper this afternoon (that's Will's own personal record book, of course) and has had more going out than coming in again today, so he should be down in weight again tomorrow. He also opened his eyes today for the first time since Christmas. That's longer -- 18 days -- than he had his eyes closed after birth, which was only 9 days. It was great to see him look around again. He did so tentatively, which was no surprise. Having the peepers exposed to light and air again after two-and-a-half weeks must be quite a shock.

The effusion continues to be little more than a trickle, with only 7cc out in the past 24 hours compared to the 40cc every 12 hours he had been losing. They seem to think that increasing the nitric oxide to the levels it had been at last week should get the credit for the improvement. They've again started talking about feeding him, though that will still be a few days off under the best scenario. That's great, because he's going to seem awfully small again once he loses all of this fluid, and it will be good to get that turned around and have him bulk up the right way.
I never thought that I would cheer for Will to be smaller on one day than the next given the fact that he started out about as small as you can get, but I was very happy today to see him noticeably smaller than yesterday. He dropped an amazing 125 grams, and it clearly shows. His hands and feet are no longer puffy, and he just seems a bit smaller all around. He still could stand to lose a few hundred more grams over the next several days, but this is a great start. He just seemed more content, too, moving a bit more and just generally seeming more like himself. They've been able to continue weaning his ventilator settings a bit, which means it is taking less support to help him breathe.

Additional good news comes in looking at the pleural effusion, which is barely a trickle today. We're not sure why this has dried up so much again, but don't want to question it too much. His x-rays still look great, so it's not a case of the fluid building up and not being pulled out by the suction.

So, overall things are about as good as they have been in a while. He definitely deserves a few easy days after what he's been through the past few weeks.

Tuesday, January 11, 2005

For now, the chest tube seems to have been a good idea. Will was stable all night, and his oxygen needs barely fluctuated in the past 24 hours, and they have been able to decrease his ventilator setting significantly as well. It seems that getting the fluid out of there was the right call, now they need to find a way to stop the flow all together. To that end, they increased the octreotide dose today, and hope that this might ease things a bit. He is losing less -- they took off more than 70cc of fluid in the past 24 hours (as of about 11 this morning) but only 8cc in the last eight hours of that day. Maybe the nitric oxide increase helped.

A physical therapist visited this morning and showed me a few things I can do to help Will with his range of motion. They are little things like helping him to bend and flex his arms and legs. The therapist also is working on other things that require a bit more skill that should help Will to feel better and be more active once get slims down again. We don't get many opportunities to do hands-on parenting, so I welcomed the chance to help him out. Mary and I will be able to do this for him a couple of times a day now.

And what would an update be without a little input about Will's output? Let's just say that he had some spectacular diapers overnight and into today, and that should help him to slim down. He did gain again today, but only 12 grams, so it seems like they're getting him turned around and headed in the right direction.

Monday, January 10, 2005

If ever there was a night for an ice storm that is keeping us away from the hospital, this is it. We tried to head out tonight, but there is a thickening layer of ice over everything, and we thought it best not to take a risky trip the hospital that might end with both of us as inpatients rather than just visitors. So it was a big relief when we called Will's nurse to find out how he was doing and for her to say he was having a great night. All of his stats are fantastic from the sound of things. The chest tube really seems to be making a big difference. They normally need to turn his oxygen up bit when they do his "cares," things like changing his diaper, taking his temperature, suctioning out his breathing tube, etc., but tonight he kept his oxygenation levels high throughout without a change. It was a difficult decision for the doctors to make, but after a few hours, it sure seems like the right one.

Not being able to see Will in person, I took a look back through the blog to see how far we've come. We've had a bit of the naivete smacked out of us along the way, and really learned to open ourselves up for tremendous mood swings, but we've also had the chance to spend an lot of time with an amazing little guy. Seeing the pictures as I scrolled by made me want to see them all in one place, so I created a separate post that has all of the thumbnails I've posted here over the past 11 weeks. I cheated and put it at the very beginning, but you can get to it here or by the link off to the right. Someone with better html skills could probably make a pretty snazzy page out of this, but it does the job. You get to see him go from a scrawny little thing to the wide-eyed charmer he was at Christmas. Seeing us hold him, and seeing his eyes for that matter, is hard. But we're hoping these treatment changes will hasten the time when we get to do both again. And down the road, given enough time, we'll be able to snuggle up with him here at home on a night like this and marvel at how far we've come.
You might want to get a beverage - this is going to take a while.

Will is the proud new owner of a pigtail chest tube. After needing to be tapped for the third time in 36 hours, it was clear that the chylothorax was getting worse and that something needed to be done to keep that area drained. So, after a few weeks of debate among members of the neonatology staff and many conversations with us, they decided to put one in. Will was tough as always, dealing with it just fine. It seems to be doing the trick. They've been taking about 40-45cc out of that area with each recent tap, and about that same amount came out again as they were putting in the tube.

The "pigtail" aspect of the tube is an accurate description of the end that is inside his pleural cavity. It is a small, soft rubber tube with about an inch or an inch-and-a-half that coils at the end. The coiled end has many small holes in it through which fluid can be pulled. It's sort of like the reverse of one of those watering hoses that has all the holes along it to better distribute water on your lawn. With Will, the holes will allow fluid to be pulled from a larger area rather than just through the end of the tube. The tube is hooked up to light suction which will pull the fluid out continuously, so Will won't need to wait for the fluid to build up enough to compromise his lungs before it is taken off.

And he does do better with the fluid gone. Last night his x-ray looked bad, with the left lung not showing much sign of working at all. After they tapped him, the x-ray looked great, the lung was as full as the right one and working well. The doctor who did the tap last night said Will responded immediately; Will's oxygenation was climbing steadily as he drew off the fluid, and he needed less and less support because his lung was filling with air at the same rate the fluid was coming off, it seemed. The fluid isn't in the lung, just around it, putting pressure on it and collapsing it down.

It might seem to be a no-brainer to put the tube in and keep him from being compromised, but it was definitely a matter of weighing risks and benefits. On the plus side, it is in once and requires no further needle sticks. It will keep the area continuously drained. On the other side of things, however, it has a higher risk of infection because he now has a foreign body sticking out of his side, it is said by small children who have them to be fairly uncomfortable on an almost constant basis and might clog and need to replaced. But the needle sticks Will was getting with increasing frequency were no picnic either, and each stick carried its own small chance of infection as well. We hope this was the right move. It seems so right now, and now we hope that having that pressure off his lung and heart (which gets pushed on by the displaced lung) will help his blood flow, which should help to keep the fluid in his capillaries and out of his tissues and thereby help to decrease the edema that has him so puffy.

They've also decided to increase his nitric oxide again. He had been getting that to combat pulmonary hypertension. The last check found that he no longer had that, so they have been weaning it down. But they took a hard look at his status over the past week or so, and found that last Tuesday was his best day in a long while. That was the point at which we thought the chylothrax was drying up. So, they have decided to try to get his various medicines and settings back close to where they were that day in the hope of getting him back to that good place. His nitric oxide was still high at that point, so they're bringing it back.

That and the chest tube were today's big things. Tomorrow might bring an increase in the octreotide or something else. Dr. Colaizy seems to want to limit the big things that they do to Will each day so that he can reasonably recover each time before they start in again. That seems like a good plan, and so far he is responding. Yesterday's big things involved tapping him more frequently and increasing his dopamine. That was to keep his oxygen needs more consistent and to help him pee off some of the fluid. It worked on both counts, particularly the latter. He had more in one diaper overnight last night than he'd had in the previous 36 hours (42cc for those of you keeping score at home). He continues to do well on that today. The result is that he only gained 6 grams of weight between yesterday and today. That's a move in the right direction considering his gains over the past week or so have been between 50 and 100 grams each day.

None of this is going to happen overnight. Even with fantastic diaper filling and a turnaround on the way his capillaries are holding fluid, it will take considerable time for him to get back to his fighting weight. They estimate that he has as much as 600cc of extra fluid on him, so that's a lot of 42cc diapers. And he continues to take in fluid, of course, in the form of nutrition, medicine and blood transfusions. It seems like they're on the right course, but we must be patient. Same thing goes for the chylothorax. The chest tube will keep the area relatively empty, but that has little to no effect on the effusion itself. For that, we must hope the octreotide works, that bringing the nitric oxide back online will help, that it will just dry up on its own or some combination of all three of those things. Such patience isn't easy, and we're not the ones so swollen with fluid that we haven't been able to open our eyes since Christmas Day. But we don't really have a choice. At least it feels like we're moving in the right direction again. Only time will tell.

Sunday, January 09, 2005

Well, some good news: They were able to get an additional 45cc out of Will's pleural cavity this afternoon, and the results were immediate. The doctors say that they can watch his oxygenation levels steadily climb as they pull fluid out of that area, which means his left lung instantly responds to the decrease in pressure. It's not good that it is reaccumulating so quickly, but the fact that his lung continues to respond quickly is a good sign. In addition, my concerns about putting an IV in his head perhaps led the nurses to look one last time for a vein in his arm, and they found one. Next time he might not be so lucky, but for now his head remains free for a comforting parental cupping of the hand. So, right now he's doing pretty well. I almost forgot: his last diaper had 15cc in it. Good news for a little guy with a lot of fluid to lose. That's more in one diaper than he had all of yesterday, so we hope that is the signal of a new trend. That's what the doctors hoped for when increasing his dopamine and getting the fluid off, so it's a nice change to have the result meet expectations. Now we hope the fluid will stay off the lung for a while.
Sorry for the lack of a post for a while. It has been hard to know what to write because even Will's doctors are stumped at the moment.

They tried unsuccessfully to tap him yesterday, getting only a tiny bit of real thick fluid. His x-rays still weren't looking good and he wasn't oxygenating very well, however, so they took another look and saw that there indeed was fluid there. So, they tapped him again last night late (10:30 or 11) and got 45cc off. They think when they tried earlier they weren't in the right place, or were in a pocket that has formed because of scar tissue that didn't really have much of anything in it. His x-ray after that improved a little, but not like they'd hoped. They looked again this morning and it looks like he has even more fluid there already. They don't know why, but it seems to be getting worse now, not better. That might just be because the fluid flows at different rates, sometimes more, sometimes less, and that last night's tap came coincidentally before a point where it was going to flow more.

So, right now they are tapping him again. They've outlined a course for today where they are going to try to be more aggressive about tapping him before he needs it (much like they've done before), increasing his dopamine again (they had been trying to wean it a bit) to get his blood pressure up to get him peeing more (only 10cc in the past 24 hours) and might try him on a different ventilator, a conventional one that might inflate that left lung a bit better. If that works, great. If not, they'll look tomorrow at the possibility of putting the chest tube in after all and of increasing the octreotide. We're not crazy about either idea, but have told Dr. Colaizy that she needs to do for him what she thinks is best to get him well.

On top of all that, they're putting an IV line in his head right now because the veins in his arms are too damaged from all of the other IVs to allow them to put one there. He needs a blood transfusion to get his hemoglobin levels up, and that's the only place to put it. It's fairly routine, they say, but we still don't like the idea of them doing it. It'll just be in one of the veins in his scalp, and they'll keep it in as long as it stays good.

So, another day of waiting and hoping that all of this stuff they're throwing at him will work. We've been here before and Will has responded, so we can only hope that will be the case again. That said, if you hadn't seen his x-ray or heard from a doctor that the fluid was reaccumulating and that they were concerned, you'd think he was doing OK. Despite it all, his oxygen needs aren't much higher than in the past few days, his blood pressure is pretty good, his heart rate is good and he seems to be handling this well. It's sad to say, but this is normal for Will, and he has proved to be a tough little guy who just rolls with the punches.

Saturday, January 08, 2005

We're here at the hospital in a waiting room, waiting, fittingly enough, for them to try to tap the area around Will's lung again. It's slow going for some reason, but we're hoping they're able to get something out of there this time. His left lung is a bit compromised, and he'll certainly benefit from having that fluid gone. He's been doing OK today, needing more oxygen than yesterday. He did actually lose some weight between yesterday and today... not sure how much, but any move in this direction is a good thing. They're really regulating his fluid right now, not giving him very much, and so they'll need to keep a close eye on things so that he doesn't get too dry. He has enough fluid, as I've written here before, but it's not in the right place.

A correction to last night's post is in order: While meeting his uncle P.J. did allow Will to meet all five of his aunts and uncles who are Mary's brothers and sisters, I neglected to count his Uncle Chris and Aunt Diana, spouses of his Aunt Ann and Uncle P.J., respectively. As one who married into this brood myself, you'd think I'd have been more careful in my count.

Friday, January 07, 2005

No one is sure why, but Will's x-ray tonight was dramatically improved and he was pretty much back to where he had been earlier this week when he put together a string of good days. They did try to tap him this afternoon, but again there was a clot that blocked the needle, this time before they got anything out of him. So, that doesn't really explain the turnaround. That's OK. We don't need explanations as long as he's doing well. When we left tonight he was on oxygen of 45 with saturations in the 90s, his blood pressure was good, his heart rate was low and he was breathing like crazy.

He got to meet his uncle P.J. today, who flew in from Phoenix for a visit. With that, Will has now met all five of his aunts and uncles. Maybe he was showing off. He still needs to pee (Will, that is) and could stand to get rid of a lot more fluid, but he was doing some of that today and will get another dose of diuretic at midnight to help speed the process.

As for the pleural effusion, since they didn't get anything today, they can't really consider that an official tap. That puts him at 60 hours and counting since the last one, and he should be able to hold out at least until morning, which would mean it had been at least another three days. It's not completely dried up, but it's obviously slowing down, which is great.

Despite the fact that his morning x-ray showed that his lungs were "whited out" -- a term that pretty accurately describes the way they look when they aren't filling very well with air -- Will was doing pretty well when I stopped this morning. He did need a bit more oxygen, but his blood pressure, heart rate and general disposition were fine. He still isn't peeing much, so they're giving him a couple of doses of the diuretic today in the hope that this will stimulate things. They also plan to tap the area around his lung this afternoon. He didn't make it three days this time, but more than two isn't bad considering where he's been. They might have been able to hold off longer, I'd assume, if his lungs were doing better overall. All of the fluid in his body beyond that in the pleural cavity can't be helping things, as it puts a lot of pressure on his lungs. So, once again, we wait to see what that does for him.

If he gets too edgy, they can put on a CD that Mary and I recorded for him of us reading him stories. He seems to like being read to, so the NICU music therapist worked with us earlier this week to record some of the stories with a bit of light lullaby music in the background. Will now has a CD including "Jamberry," "Bear Wants More," "The Red Barn" and his mother's personal favorite, "Goodnight Moon." My own favorite is "Two Little Trains." It, "Goodnight Moon" and "The Red Barn" all are by Margaret Wise Brown, a name I'd never heard until a few weeks ago. Now, I have a favorite children's book author.

Thursday, January 06, 2005

A quick post before bed to say that Will is doing OK. We were at the hospital later than planned because we were on "pee patrol." They've been giving Will a diuretic to help him pee off all the fluid he's taken on, and usually he responds by soaking a diaper. Tonight, several hours after his dose, he still was dry. This was perplexing, and a bit troublesome. The resident told us it means that while he has a ton of fluid in his body, not enough of it is in the right place to get to the kidneys. It needs to be reabsorbed into his system before he can get rid of it. That takes time, and as long as he is sick with the pleural effusion (which still hasn't needed tapped after 36 hours and counting...), he'll likely continue to leak fluid from his capillaries and elsewhere that will make him puffy. As usual, it's a waiting game. It doesn't help matters if he doesn't pee. However, I noticed about an hour after the last check of his diaper that he was squirming a bit more than usual, and checked. Eureka! There was pee in the diaper. Not a lot, but enough to tell us everything was still working. By the time we left, with our son now in a nice dry (and deservedly so, I might add) diaper, he was down to needing about 50 percent oxygen and seemed ready for a good night's sleep. I told him to dream of babbling brooks, raging rivers and waterfalls. We'll see if that works. If not, we may need to dip his hand in a cup of warm water the next time he dozes off.
Will had a pretty quiet night and was doing OK this morning when I stopped to see him. He did put on weight again, but it was a lesser amount and they seem to think they have his fluid issues under better control. His x-ray looked better, too, as his lungs were more inflated. There is some fluid around the left one again, but they didn't seem concerned and think they can let it go for a while before needing to tap him again. It's already been a day and he's doing OK, so we take that as a good sign. Overall, they just need to help him to get some of the fluid off and to keep him comfortable as he continues to recover from yesterday's rough morning.

Wednesday, January 05, 2005

Will is doing better tonight as the doctors work to find what makes his lungs work the best. They've said many times that all he really needs to do for himself is pee (and they'll even give him drugs to help with that); everything else they can control. Such is the case with his lungs. By tweaking the pressures on his ventilator, moving him around in his bed and raising or lowering the amount of oxygen he receives, they can keep things working pretty well.

That said, I should learn to not use words like "collapse" when talking about his condition. Yes, a portion of his lung had collapsed today, but that's kind of misleading. Much as I've said when referring people to other pages that discuss medicines or conditions that are really more geared toward adults, don't affix the same importance to these things that you would in an adult. Lung collapse in an adult is bad. But for Will, a portion of his lungs is always collapsed because they are still so immature that they don't fully inflate. So, if a portion of his lung isn't open, it's collapsed. Today, a part that had been working well just wasn't working so well. It will reopen again as they alter the way they treat his lungs. At one point, his doctors talked about renal failure. Again, a big deal for an adult, but not uncommon for Will. They just meant his kidneys weren't working particularly well that day. Translation: He needed to pee. They gave him a diuretic and he did. They describe things in medical terms, and we've been there long enough that we've started to talk that way too because it's easier to figure out what's going on with him when we speak the doctor's language.

So, we're kind of back to where we were just before the recent string of good days. He's having some trouble that is very manageable, and they're getting him back on track. We'll find out tomorrow if the fluid around his lung is reaccumulating, and they'll adjust his treatment accordingly.

Will doesn't seem to like snow. How else to explain the downturn he took overnight and into this morning? While the inches are piling up outside, Will has decided to have some breathing troubles again. They finally tapped the area around his lung this morning, after a 73-hour gap. They took out 35cc, which is about what they've gotten before, but it obviously took a lot longer to accumulate this time.

He has been having some trouble working off his CO2 and had been needing more oxygen. They've found that in addition to the fluid around his left lung, his right lung had a collapsed area this morning. That's not uncommon, and is likely due to another small bit of mucus blocking off a part that previously had been working well. As that works itself free, that area should inflate more fully again. Meanwhile, they tapped the left side earlier than they would have needed (a good sign) so that his left side can now compensate a bit for the right. He's doing better now as a result. We hope that whatever is in that right lung comes out without a fight, not wanting a repeat of the early-morning phone call incident.

Meanwhile, he continues to put on fluid everywhere, topping 1700 grams today. They've upgraded it from a "cosmetic issue" to one that needs to be dealt with. It's not dangerous; but all of that fluid isn't helping his efforts to breathe. They're backing off on his fluids by not replacing what seeps out of the spot where they tapped him as they have in the past, and will give him a diuretic again to help him get rid of it.

Through it all, he seems comfortable. Morphine and Ativan have a tendency to do that to a fella, of course, but really he's just so tough that this just doesn't seem to faze him much. We're hoping he continues to improve throughout the day to get back to where he has been recently. No reason why he shouldn't.

Tuesday, January 04, 2005

Will was doing so well today that we braved the snow and ice to go back to the hospital tonight to spend a bit more time with him. We love going to see him any time, of course, but it's particularly satisfying when he seems to be content and doing well. He continued to breathe well, didn't need much oxygen and the fluid around his lung doesn't seem to be accumulating any more quickly. Now he really needs to get rid of all the general edema he has that has him so puffy. There's bulking up for the winter and then there's what Will is doing. He's already sleeping in a bed with a heating element above that keeps him warm enough to go shirtless, so he doesn't really the extra layer. Now, we're just hoping for more of the same or better. He's had a tough three weeks and could use a good stretch as he celebrates his 10-week birthday tonight.
For the first time in weeks, the doctors actually discussed feeding Will. No time soon, but if the fluid around his lung doesn't reaccumulate (we're up to 55 hours since the last tap and counting), they'll maybe start him on a low-fat formula called Portagen. He needs a low-fat diet because most fats are drawn into the lymphatic system and would, in Will's case, then leak right out into the pleural cavity. This formula would allow him to get some nutrition and start using his digestive system again without wreaking too much havoc with the chylothorax. I could get into the difference between medium-chain and long-chain triglycerides and such, but the point is, he might get to eat soon. This is all still a ways off, but it's encouraging to hear them discuss it.

Otherwise, he's doing pretty well. He continues to pack on the grams, topping 1600 for the first time today, but should be able to pee that off over time. He's retaining more fluid in part because they're not tapping him. Each time they did, the small hole where the needle went in would allow the general fluid in his body to leak out. He would sometimes lose 100cc or more of fluid in a day just through that hole. So, while he's bulking up a bit, the reasons behind it are still positive.

Monday, January 03, 2005

Today I looked back at the links off to the right down there to all the posts from the past week, and was struck by how upbeat all of those first lines seem. The terms "pretty good," "pretty decent" and even "great" are used to describe Will's days. I was a bit surprised at that, to be honest. The past week has been no picnic for Will. Chalk this up to two things. I do try to put on a brave face and be upbeat when I can in these reports. But I've come to realize that Will seems to rarely have an entire day that is bad. There is always something positive in there, something to bring about hope that tomorrow will be better. If his blood pressure is low, then his oxygen needs might be good. If his heartrate is high, he might be peeing like crazy. He struggles, of course -- mightily sometimes -- but I don't usually need to look too hard to find something positive to report.

I bring this up because Will is in the midst of a streak of sorts. Since being tapped Friday around 6 p.m., he has been doing good. Not great, but good. He's been tapped twice since then, but by the time we left him just a bit ago tonight, he hadn't needed to be tapped for more than 38 hours, and he continued to be calm, with a good heartrate, decent blood pressures and reasonable oxygen needs. He's even peeing well again despite the fact that, contrary to my earlier report, they decided against re-starting the diuretic (but may yet start one overnight). Again, we're hoping against hope that the octreotide is working. As it is, they'll hold off on his feeds for two weeks or more after the last sign of that fluid around the lung, so it'll still be nearly February at the earliest before he eats (after already having gone without it for about three weeks). But if he can get past this and start eating again, he'll get bigger and stronger and his lungs will grow and we can start to see some progress again.

I had a dream the other night that we had brought Will home, and our only concern was that we were holding on to him too much. It was one of those super-vivid dreams, where you're convinced that it's really happening and that the things in real life that run counter to it must be the actual dream. It might be the best dream I've ever had, and even though the feeling had dissipated some by the time I woke up, I was filled by such joy at the prospect of having him home that it was tough to go back that morning to see him in the NICU as usual. We want so much to get him home that it hurts. A few more days like this, where the reference to good things in my post is about the entire day and not just a small part of it, put us that much closer to realizing my dream.
As of this writing, the doctors still haven't needed to tap the area around Will's lung, which puts him at 30+ hours and counting since the last. That's great news, and it's hard right now to not get overconfident. We're trying to balance hope with reality. When we came in on this icy morning, Will was on 45 percent oxygen and seemed to be doing well. The only thing I would change if given the chance (other than the fact that he's on a ventilator, etc), is that I would get rid of the fluid he's retaining. He's back up over 1500 grams, and it doesn't look like a comfortable state. They're going to start him on one of the diuretics again, and that should help him to get rid of some of it again... or at least to stay even. Otherwise, things are very much the same today as they were yesterday in terms of his condition and his treatment. We like forward progress, of course, but in its absence, we'll always take stability.

Sunday, January 02, 2005

Right now, Will is having a great night. We know that can be an ephemeral thing, so we celebrate it for what it is: a moment where he isn't struggling against something, a time where he can rest up for the next hurdle.

When we came in today, they had recently tapped him and got 19cc. That was less that they've gotten recently, and even if you add the 10cc they got yesterday afternoon, it's still a lesser quantity over a longer time than they've gotten in the past several days. Does that mean the octreotide is now working? We'd like to think so, but we'll reserve judgment for a couple of days. No matter what gets the credit, something is working for him. Over the course of the day he needed less and less oxygen. When I left tonight he was on 38 percent, which is as low as I've seen him in days. He also received another percutaneous line -- he now has one in each leg -- to deliver medicine. These are the lines that run from around the ankle or knee area up into his lower torso. They are more efficient than IV lines, and will last longer. Will likes to keep his hands up by his face, as many babies do, as a way to comfort himself. This frees up both hands for this important task.

We know that things can deteriorate quickly for Will, but we're really hoping he's turning a corner here. As I said earlier, if nothing else, it has meant a nice stretch for him to rest and gather strength for the next thing to come.

On a lighter note, who knew we were so trendy? The many end-of-the-year wrap-up stories floating around all seem to mention blogs, including this one that would seem to suggest that Will's blog is part of a growing movement. Looking at the visitor count at the bottom of this page, which has climbed to more than 11,000, it's clear all it takes is a compelling subject and many loyal fans to make a successful page. As usual, we're glad to be able to keep so many people up-to-date through this site, and are grateful for all of the support.

Saturday, January 01, 2005

Will had a strange day today, but strange in a good way. We left him in a good place last night, but came in this morning to find him again needing a lot of oxygen. The nurses chart his every move with precision, and his chart this morning showed his oxygen needs each hour: 40, 40, 40, 45, 50, 55, 80... It was a steady downturn that left him at about 75 this morning. He improved to 60 while Mary and I were with him, but he then started flailing about as if in pretty constant pain and discomfort. He was given a sedative, but that seemed to help for only a few minutes, if at all. The doctors had said they'd probably need to tap the area around his lung this afternoon, but by 12:30, we were asking them to do it because it was clear he was going downhill. He has a new attending physician (they rotate each month), and she seems more convinced that Will should have a chest tube inserted to keep the area drained if he's going to continue to accumulate fluid. While we went to get something to eat (we don't stick around to watch things like this usually), they tried to tap his lungs. Before doing so, they also increased the pressures on his ventilator because his lungs looked a bit less inflated than they'd like.

We returned expecting them to say they'd taken out a lot of fluid and that they were planning to insert a chest tube soon. Instead, they told us they got only 10cc out of the tap, in part, they think, because some blood from all of the holes they've poked in his side has gotten into the fluid and clotted in the end of the needle and blocked their attempt to get more fluid. A subsequent x-ray showed that while there still was some fluid left behind, his lungs looked much better. Throughout the afternoon he continued to improve, and ended up having a good day and (at least until we left) a good night, too. An x-ray tonight showed that he still has some fluid around his lung, but it doesn't seem to have increased, and it hasn't seemed to bother him much. We know better than to think this is anything but a fluke, but if it is an indication that the octreotide is working, that's a good sign. The new attending physician increased his dosage more rapidly than Dr. Dagle had, and maybe they've finally hit the right level for it to work. Then again, maybe not. The medicine has its downside, so we were certainly OK with Dr. Dagle taking it easy on the dose, but Dr. Colaizy (she's so new there's no web page to link to for her yet) is still mindful of not giving Will too large a dose. We'll see what happens.